Hi Miranda, I didn't realize the severity of the type of epilepsy
your daugther has. By the way, what is her name, I would like to
address her properly within my responses, it would also help with
the prayer request. It's hard to decipher a real cure given the
fact that her entire brain seizes. Have you been in touch with the
Epilepsy Foundation in your state? If not, you might want to
contact them for other information and such. I wasn't medicated
until I was 8, not having been diagnosed before then, so I developed
fairly normally, despite that. When you son is older, he will
understand her problem much easier. He is only one and doesn't
understand why his sister is having problems. I had two younger
brothers, who, I am sure often wondered why I acted the way I did
when I had seizures and probably stayed away from me too because of
them. I can't believe that here we are in the year 2007, and they
still do not have the answers we seek. Where do you live and where
have you had her evaluated and tested? Seek a second and even a
third opinion on her diagnosis if you need to. Good luck

Alison

--- In epilepsy-testimonials@yahoogroups.com, miranda goranflo
<mirandag1981@...> wrote:
>
> Alison and Laura,
>
> Wow, both of your stories sound amazing... and scarey. I am
happy that worked for you and you and I know it does for some, but
my daughter is 4. I just can't imagine putting her through that when
I still have so many other (less invasive) options. She really is
getting so much better w/ the herbs, supp., and diet. I see her
making a full recovery. Hailey was diagnosed w/ complex partial w/
secondary generalazation at age 2 w/ no known cause. They just
recently changed her diagnosis to generalizied onset epliepsy. Her
whole brain seizes so they would not be able to just remove a peice.
They want to do a corpus collostomy. Where disconnect the two brain
halves. Very scarey. They have also been pushing vns on us for quite
some time. I don't want seizure reduction... I am after a cure. She
can't live like this for the rest of her life. I really feel this is
it for her. I don't know if the meds did the same things to you two,
but they have reduced my daughter to infancy. I
> have had to stand by helplessly and watch my 1 y/o son pass her
up. The meds are awful! I will update you w/ our story as she
progresses. Please keep us in your prayers, as we will you. Thank
you so much for sharing your stories, I just can't imagine doing
that to her. Maybe if it were myself, but not to my 4 y/o. I can't
say never, but that is way down the road for us.
>
>
Miranda
>
> apinsley <a.pinsley@...> wrote:
Hi Miranda, I know it can be confusing when you don't understand
> what is happening with your daughter. Have they determined where
> the focal point for the seizures are coming from yet? I was 14
> months old when I high fever caused a grand-mal seizure. After
that
> I developed Temporal Lobe Seizures, though nobody understood my
> parents in the 1960's that there was something wrong with me. I
was
> 8 before I was diagnosed and put on medication. At least today
they
> put somebody on medication right away in an attempt to get a
handle
> on it early. If she is a good candidate for surgery than go
ahead
> with it. Children's brains often are not as affected by brain
> surgery as adults, because they are still growing, and other
parts
> of the brain will take over the part that is removed or missing.
> Good luck and you and your family are in my prayers. Feel free
to
> email me privately at ajwp@...
>
> Alison
>
> --- In epilepsy-testimonials@yahoogroups.com, laura shockey
> <lshockey4@> wrote:
> >
> > Hey Miranda!
> >
> > My name is Laura and I'm 22 years old...soon to be 23. I had
a
> gran mal seizure when I was 22 months old. But the doctors never
> figured out what was wrong with me and I never had anymore.
> >
> > I banged my head against a rock when I was 13 and my right
eye
> swelled up instantly. 6 months later after the injury I had a
gran
> mal seizure and was put on Dilantin right away.
> >
> > After that, I would have these little "episodes" where I
would
> space out, chew my tongue, sometimes groan, and have a major
> headache and be tired afterwards. I was still on Dilantin but
was
> being treated for migraines.
> >
> > When I went away to college, the fall of my freshman year I
went
> to see a nuerologist in Pittsburgh, PA at Alleghany General
Hospital
> for a second opinion. Right away he told me that I was having
> complex partial seizures just by listening to my story. That
same
> day he told me that I could continue to take other medicines to
see
> if they would work...but by that point I had already tried
Dilantin
> and was currently taking Topamax and Keppra. He also told me
that I
> could have a brain stimulator placed in me but that was more for
> people who had gran mal seizures all the time. Then he also told
me
> about brain surgery...where they would actually remove the part
of
> the brain that was causing my seizures. Right away I wanted to
have
> surgery b/c I knew it was for me!
> >
> > After going through numerous tests to see if I could have
> surgery, I took a semester off from college and had brain
surgery.
> They removed 2-2 1/2 inch part of my right temporal lobe and
surgery
> lasted 3 1/2 hours. I had surgery on Tuesday, August 31st, 2004
and
> was discharged that Friday. It was amazing!!!
> >
> > All of my family and friends said the same thing that you
said
> about your daughter...that they just wanted the old Laura back.
> Well I'm proud to say that I had surgery and it was a huge
> success!!! I haven't had any seizures since I had surgery and
the
> doctor was slowly taking me off my meds. I took my last meds for
> seizures on May 1, 2006. My final and last appt I had with my
> doctor was October 2006!!
> >
> > Surgery for me was a great success and I'm glad I went
through
> with it. Ever since surgery, I don't have to worry about when
I'll
> have a seizure and try to remember that I must take my meds. I
can
> finally live a normal life!
> >
> > Now I don't know all the details about your daughter but I
just
> wanted to share with you my story and I hope it helps talking to
> someone who has had seizures. If you have any questions feel
free
> to e-mail me.
> >
> > I hope all is well!
> >
> > Take care,
> >
> > Laura
> >
> > mirandag1981 <mirandag1981@> wrote:
> > > Hi. I am new to this site. I have joined other
support
> groups but
> > they
> > > do not have the same feelings as I do on alternative
treatment.
> It
> > was
> > > a ketogenic website group. No one had any idea what I was
talking
> > > about when I was explaining the herbs, supplements, and diet.
> > > Hopefully I will be able to find more help here. First of
all, my
> > > daughter is 4 and was diagnosed with epilepsy nearly two
years
> ago.
> > > She has progressively gotten worse due to all the meds (7).
She
> now has
> > > hundreds of seizures a day, has lost the ability to walk,
talk,
> crawl
> > > and even stand. We have recently been seeking forms of
> alternative
> > > treatment. She takes a number of different herbs including
Black
> > > Cohosh, Arnica, Brain and nerve coctail, virginia snake root
and
> > > several others. We have also been giving her supplements such
as
> > > B-Complex, Vit. E, Omega 3, calcium and several others. We are
> > > currently testing her for food allergies by eliminating
wheat,
> > gluten,
> > > lactose, sugar, soy and corn. She usually has hundreds of
> > "head-drops"
> > > a day, but she has improved over the last week. We have read
a
> lot of
> > > good things about supplements like helping with seizure
control
> or
> > > even eliminating them completely. We are looking in to every
> > > possibility. The doctors have run out of drugs and are
talking
> brain
> > > surgery with a prognosis of mental retardation. I have to do
> > something
> > > and find something that works for her. I would love to hear
from
> > > someone who has been through a similar situation. I could
really
> use
> > > some support and advice. The doctors are 'bout useless at
this
> point.
> > > I have had to do all my own research via books and the
internet.
> I
> > > don't understand why these other less invasive options aren't
> > > explained to us. Please help. We are in a desperate situation
> and
> > just
> > > want our daughter back.
> > > Miranda
> >
> >
> >
> >
> >
> >
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